Have Strength, Have Courage
The main purpose of my story is to talk about how I was healed from IC through antibiotic therapy. While considering antibiotic therapy I was desperate to hear from those who had success. The stories I found on the web were far and few and I was eager to find more information. I vowed that if I were ever fortunate enough to heal I would put my story out there for others to read. My story is for those who are considering trying antibiotic therapy and who want to get an idea as to what it was like and how it helped. It is also for those who are suffering from IC, to know you are not alone. I do not claim to be cured but healed and living a normal life. I do not claim that what I did will work for everyone or that it is the answer to all of your problems. For those of you who are considering antibiotic therapy you will learn about some of the things you may experience. For all others I present my story so that you know there is hope and never to give up on trying to get well. Never give up on trying to find your answers. This is simply my story. This is what happened to me. I call my story Have Strength, Have Courage for the many times I clenched my fists and repeated these words over and over in my fight for health and happiness. This is simply my story.
Looking back now I know that urinating frequently on and off was a part of my life for four years. It truly became noticeable to me in the last two of the four years. The frequency attacks were just not normal and I could feel that something was wrong. The problem slowly progressed. It was very subtle in the beginning. On occasion I would have to go to the bathroom every fifteen minutes from four to eight times in a row until it would finally stop. Days, weeks or even months could pass until it happened again. Those occasions became more frequent as time went by. Frequent enough for me to know that it was just not normal. I could feel that something was wrong. I went to see a urologist in November of 1998. I was told to try bladder training, which really did not work due to the urgency I was experiencing as well as the frequency.
On January 31, 1999 I came down with a Urinary Tract Infection. I knew it was a UTI because I had one other in my life a few months shy of a year before. To me it was a nuisance that would stop tormenting me in a few days. I went to see the general practitioner who did a dipstick test and told me I had a UTI. He gave me Bactrim and told me to take it for three days. Well, I took it for four and the infection seemed to be gone. Then three days later, it was back. It was important to me to clear this infection before my three week trip to Asia so back to the doctor I went. This time he gave me Cipro, a seven day course. It began to work and I boarded the plane for Tokyo. Things seemed to be OK while I was on the antibiotics but about two to three days after I finished the antibiotic it was back again. Off I flew from Tokyo to Hong Kong. I decided to see a doctor in Hong Kong who of course gave me another course of some other kind of antibiotic and some pyridium (my first experience with orange wee wee). This time the antibiotic did not seem to be working. Off I flew to Singapore. As you can imagine, I was getting worried by now. Mild stomach aches and back pain began to set in. One night I had to pee every five minutes for over an hour. There was an endless feeling of pressure on my bladder that night. I started to get scared so I saw yet another doctor in Singapore. This doctor was very nice. She actually took the time to listen. She prescribed me yet another kind of antibiotic and did an x-ray to check for kidney stones (no stones). She also did a culture, my first. The culture came back negative. The seven-day course of antibiotics did make me feel better, but something still felt wrong. It felt like something was lingering in the background, if that makes any sense. I began to feel that this infection was not going to go away. I don’t know why but that was what my instincts were telling me. I expressed my feelings to my boyfriend Michael who assured me that it would. Of course he would assure me of this. I would have done the same. What reason did he have to believe that it would not go away. I mean, you get sick, the doctor fixes it, and you go back to your normal life right? It was just a UTI!
I got home and that lingering feeling still remained. About a week later that feeling of having a full blown UTI returned. Now it was time to see a urologist. The same urologist I saw back in November, Dr S (how original is that disguise). He did a urine culture. I called a few days later for the results and it was negative. I asked the nurse over the phone what could be wrong with me and she said “It sounds like Interstitial Cystitis”. Inter what? She spelled it out for me.
I hung up the phone with the nurse, and immediately got on the web to research this Interstitial Cystitis. I was at work at the time. I read about IC, what it was and the symptoms, and how it was incurable. INCURABLE!!! I was devastated to say the least. I could not stop crying. Was I going to be sick for the rest of my life? Would it get worse? Did I really have this? I wanted it all to be a bad dream. I wanted desperately to wake up. I was in shock that this was happening to me. To make matters worse all the medical literature I read was very pessimistic. It talked about patients suffering and treatments that only worked temporarily. That was my interpretation of it anyway. To me it held very little hope. That day also I learned that IC would not kill me, it would just make me miserable. I felt I would rather be dead at the time. I was in shock.
I went back to the urologist who also told me that he suspected IC as well. He began the speech about how there were some good therapies today. I had done my reading on the ICA and none of the therapies appealed to me. He began to tell me about how a cure has not been found yet but…. I immediately cut him off and told him “not in my lifetime”. I felt that doctors had more common, life threatening diseases to attend to. This rare disease was not on the top of medical researchers list in my opinion. He slowly nodded his head. Dr. S suspected IC because of my symptoms, the negative culture and the fact that I had seen him a few months prior complaining of frequency. Little did I know that my four years of frequency were tied to this dreaded IC, that the frequency would grow into a multitude of painful symptoms. Little did I know that this was what I was headed for. He scheduled a cystoscopy for me, to take place two weeks from that day. About a month had passed by already. So began the process of waiting. I learned that IC involved a lot of waiting.
I had what you would call mild IC. Everyday consisted of an array of different symptoms. I would have different symptoms on different days. Sometimes throughout the whole day and sometimes on and off, but everyday it was something. Maybe two days out of the month I felt close to normal, meaning I felt good for me. My symptoms consisted of frequency and urgency of urination, mild to severe backaches, stomach aches, constipation, headaches, neck and shoulder pain, nausea, tiredness, flu/virus feelings, body aches, shooting pains in my fingers and toes, pelvic floor pain which would run into my legs, vaginal dryness and vaginal tingling. When I got really sick it felt like I had poison running through my veins and many of my symptoms were present at once. It was like a feeling of “sick” was running through my body. It felt as though there was a monster living inside me and I could feel its presence all the time. Sometimes “the monster” felt stronger than other times but it was ALWAYS there. This all was considered to be mild! In the beginning the nausea, headaches and flu like symptoms really threw me. In all the medical IC literature I read these symptoms were never mentioned. I took three pregnancy tests, all negative. I called my doctor in a panic. I told him about these symptoms and that I took pregnancy tests but they were all negative. He said, “you are not pregnant.” “Then what is wrong with me? I said.” “I don’t know, he replied.” Now I started to worry that something more was wrong with me. Maybe it wasn’t IC, maybe it was worse.
Mentally, my heart was broken. That was the way I felt, literally heartbroken. There was a deep sinking feeling in my chest. One night I cried so hard that I could barely breathe. I was whaling and choking for air. My face was soaking wet from the tears. It was the hardest I had cried in a long, long time. My boyfriend Michael and I talked openly about how I felt. He assured me that he would love me no matter what. He said that I was worth it and that I was still me inside. He just asked that I keep talking to him and never shut him out. I really did believe that his love for me was strong but I could not help feeling guilty. I felt like I had tricked him into falling in love with a healthy normal girl and now he was stuck in love with someone with an incurable disease. I thought that things would never be the same again. I imagined us making the greatest of plans, which would have to be broken because I was sick that day. I imagined taking a turn for the worst and winding up on disability and he would have to deal with that. Our fantastic sex life would never be the same again, and I mean fantastic! Intercourse never really gave me terrible pain (yet I thought) but it certainly was not as pleasurable. I was dry and my vagina felt “sick”. Sometimes I would feel the same virus like symptoms in my vagina. This is a feeling that only someone else with IC could understand. Mentally, I felt like a sick person, which did not exactly put me in the mood for sex. I felt that perhaps someday I would not be able to have intercourse at all and Michael would have to live with that. I love Michael so much and felt that he deserved better than me. I must tell you that Michael did nothing at all to make me feel this way. He was nothing but understanding towards my feelings. It is true that when you have an illness that you need to have consideration for your own feelings. You should expect understanding from the people who love you, but as a human being you still can’t help but to feel guilty about the impact your illness can have on those you love. All these feelings are very natural. It is all a part of mourning for the you that once was. I also used to watch the people around me and even people on television and think “they get to live a normal life.” I guess I was feeling envy for those who were healthy. Sometimes I would close my eyes and picture a healthy me laughing and running. At the same time I could never bring myself to say why me. Some people get through life with few scratches and some people suffer terrible tragedies. It is not a punishment, it is just the nature of life, so why not me. Deep down I knew that I was a strong person. I knew that I would find a way to fight this even though I may physically never be the same again. I would find a way to be happy again and live a good life. It was not in me to be miserable forever. At the time I thought I would learn to live with IC for the rest of my life and make the best of it.
This is an awful lot coming from someone who is not really sure if she had IC yet. After all where were all these non bladder related symptoms coming from? The day came for me to have my cystoscopy done. At the very least I would get some answers. After the test I had about a week to wait for the results. More waiting! I was approaching two months by the time I went to see Dr. S for my results. What I got was a little piece of paper saying that I did not have IC because there were no mast cells in my biopsy. I read enough to know that half of the IC patients tested in control groups had no mast cells.
What the heck did this mean? Dr. S. said that my bladder was slightly inflamed and that he felt things would calm down on there own. If there was one thing my heart I was sure of it was that things would not calm down on there own. This I knew. I explained to him my feelings about mast cells and he told me that he did not diagnose IC based on test results but on my symptoms. So why the heck did I endure that painful cystoscopy, I thought? The cystoscopy gave me the knowledge that my bladder wall had a little scarring on it, which is kind of useful to know but not very helpful. Often a bruised bladder is a method used by many doctors to diagnose patients with IC. I would later learn that there were quite a number of people who suffer the symptoms of IC with little to no glomerulations on their bladder walls. If my bladder being more bruised, and more pain is what it would take to get diagnosed than I never wanted to get diagnosed. It was good that the cystoscopy was used to rule out bladder cancer but I did not get the answers I expected from it. I asked Dr S. if he had done any blood work. He said that he was just a urologist and that I would have to see my general practitioner about that, as well as for my non bladder related symptoms. He said that he would monitor me and scheduled an appointment for me to come back in three months. Three months! What the heck was I supposed to do in the meantime? I was starting to get frustrated and angry. I went straight to my general practitioners office from there. Headaches were a big prevailing symptom at the time so I explained this to the doctor as well as the suspicion my Uro had about IC. What I got was a speech about cranberry juice and cotton underwear. As far as my headaches went I was told to see an eye doctor. Now I was really pissed off. I thought “what a @#!*& moron”. I walked out of that office and never returned. I was in a rage. I was angry with Dr. S at the time for not confirming whether I had IC or not. I was angry with him for not prescribing or recommending anything that could help. I was angry with him for saying that things would just calm down. I was just disgusted with my general practitioner period! I felt like I was out on the street with no where to go. What was I supposed to do now? I felt all alone. I wanted to cry my eyes out but I was just too angry to do so.
Believe me I did not want to have IC. I wanted to be told that I did not have this. Deep down I knew many of my symptoms matched this disease, however at the time I was still unsure that this was what I had because the doctors did not tell me so. At the time I wanted someone to tell me what was wrong. I decided to see another doctor and at the same time I decided to continue research on IC and other diseases. My sister recommended that I see a herbalist. This appealed to me since I did not want to be on medication for the rest of my life. My girlfriend Jacquie has Lupus and I watched cocktails of numerous drugs make her worse over the years. I never did see that herbalist but later I began to study and use alternatives on my own, saving drugs like Pyridium for when bladder symptoms got really bad. Mostly I took nothing for my symptoms in the beginning. As far as the IC diet goes, I did not have much luck with that. It was really confusing because sometimes I could eat a certain food and was fine and other times I could eat the same food and instantly get sick. I have been told that certain foods can make you feel bad days later. I am still not sure that this was the case for me. All in all, eating better food instead of junk did make me feel somewhat better. Heck, it made me feel better before IC as well. I would have to say I am all for a good nutritional diet in regards to IC, even if it is not precisely the IC diet. The IC diet is a great tool for many but it did not do much for me.
I prayed to god A LOT. I prayed to god to help me to help myself. I am not a religious person but I do believe in god. I have always found strength and answers from god. I was not asking for a miracle here. I was more than willing to do the work. I just wanted guidance in helping me to make things better. Through my research I found the book “To Wake in Tears” , by Catherine Simone. God had begun to answer. I really related to Cathy’s book. I am a woman who has the ability to construct my own opinion, and I really agreed with her perspective on IC. I found myself reading points and saying, “yeah, that’s what I think too” repeatedly. I won’t get in to detail about the many things I learned from the book but I will tell you the two most important. Firstly, I finally discovered I was not nuts…..or pregnant for that matter. Cathy talked about all those non-related bladder symptoms in her book. It really gave me piece of mind. Finally, those things made sense. I STILL was not sure I had IC but I was coming closer. I also discovered the work of Dr. Paul Fugazotto in her book. Now I had briefly seen Dr F’s site on the Internet before but I quickly dismissed it. In my previous research I had learned that the cause of IC was non-bacterial related so taking antibiotics would not help. Now I was learning that they might help after all. This totally blew my mind. The possibility that I a had an infection that could not be identified through a colony count but could through a broth culture brought me to the edge of my seat. I will never forget that feeling of thinking that perhaps I was not imagining things after all when I felt the previous courses of antibiotics made me feel better but did not finish the job. It was a real revelation for me. For the first time I had a glimmer of hope.
It was still at least three weeks until I was able to send my sample to Dr. Fugazotto since my career requires a lot of air travel. When I read Cathy’s book I was on the plane to London for two weeks. From there I would stop home for one night and travel to Houston and then Florida for yet another week. So more waiting was involved. In the meantime my symptoms began to get worse. I was now into my third month since this whole escapade began. Long flights would often intensify my symptoms. For the first time one night in London I experience the most bizarre and disgusting sensation in my vagina that I would ever feel. There was a tingling sensation mixed with pain. It was like a cross between being on the brink of an orgasm and being kicked in the crotch. A feeling of tingling mixed with pain that could not be relieved. Masturbation was out of the question because it just intensified the sensation and increased the pain. It was like the god of perverts had played a really sick and cruel joke on me. It is uncomfortable and difficult to write about these symptoms. I considered them to be up there with the most terrifying IC symptoms I had. You know the kind, where you are so scared that you just lay there frozen stiff. I am writing about this so that you know you are not crazy or alone if it happens to you. I have since learned that it does happen to other IC patients by talking with them on websites. The coined phrase for these symptoms which was created by Icers is “hyperstimulated clitoris.” Nurse practitioner BJ Czarapata believes that the clitoral pain and sensation is caused by an irritation of the pudendal nerve. This nerve goes through the same bony opening that the piriformus goes through. If the muscle is spasming, and therefore fatter, it presses on the nerve. Patients can help to relieve these symptoms by performing piriformus exercises. She believes that another possibility is that the pelvic floor muscles are also being irritated and that learning how to relax those muscles can be helpful. Dr. Matia Brizman, an IC expert and practitioner of Chinese Medicine and Acupuncture believes that hyperstimulation is due to imbalances in the body. She says when there are imbalances in the body all of your tissues and nerves get effected. When the body is not balanced it does not process properly so it has to work harder and winds up going into overdrive. All that overwork causes the tissues and nerves to get heated, inflamed and stimulated. On top of that, there is even more inflammation caused by the yeast and bacteria. While working to rebalance the body, Matia tries to nourish the tissues in order to calm everything down again. I asked her what one could do temporarily to calm hyperstimulation down when having a bad flare up and she said as a temporary "bandaid" you can try douching with Goldenseal, which may take away some of the heat and cool down the nerves. It is a superficial approach and does not take care of the root of the problem, which is rebalancing the body, but may bring some relief. There is also a topical product called Licrogel that can soothe and cool down the tissues in the vaginal area. You can purchase Licrogel from North American Pharmacals (under skin care)at www.dadamo.com If you are experiencing “hyperstimulated clitoris” it may also be very helpful for you to see a professional physical therapist. Some of us have agreed that it is by far one of the worst IC symptoms there is. The worst of it all is that some of the IC patients who have tried to discuss this with doctors and loved ones were often laughed at by both. They were not taken seriously. One woman once told me that she later found out that her doctor left a note in her file “obsessed with her urethra”, and passed it to all her new doctors. I had these symptoms happen to me on a few occasions but I know some women who walk around with it non-stop for days or even weeks, driving them totally off the wall, some to the brink of suicide. It is hardly a laughing matter. So if you are experiencing hyperstimulation know that you are not crazy, you are not alone, and most importantly you are not a freak.
The night I flew home from London I had my first full blown attack. I had non stop frequency, urgency, nausea, body aches, vaginal tingling and a feeling of poison running through my entire body. It seemed as though every symptom I had came out at once. I was so sick it was hard to lay down because it increased my frequency but it was hard to stand up because I was weak and sick all over. All I could do that night was pray that I would fall asleep. That is what I would do when I had a major attack. The one thing I had was sleep. Even though it was difficult, if I could get myself to sleep I would always feel better the next morning. I often prayed to god to let me fall asleep, and he often answered. I feel lucky for this because I know that a lot of other IC patients wake up feeling the same. I often thanked god for this saving grace. That night I began praying to god for help really hard. I suddenly got up and went into the cabinet for some Pyridium (this was before I started using it often). It calmed things down just enough for me to fall asleep. God was with me that night.
I had yet another major mishap on the way from Houston to Florida during that three week travel stint. While I was on the plane my bladder began to get nervous. I had to go to the bathroom every five minutes. We got stuck taxiing on the runway and were plane number 17 in line for take off. As you know you are not supposed to get out of your seat when taxiing. I started to panic. It was a good thing I got upgraded to business class because the bathroom was near by. I locked myself in the bathroom and sat on the toilet (lined with paper of course!). After about a half an hour the flight attendant knocked on the door to see if I was alright. I opened the door and motioned for her to come closer. I burst into tears explaining that I had a bladder disease that was a lot like a UTI that never went away. This she could relate to. I explained my symptoms in detail and that sitting in my seat was like hell on earth. Thank goodness she was a lovely and understanding lady. She felt so awful for me that she let me stay in the bathroom until takeoff. She gave me some water to take some Pyridium so by the time we were ready for takeoff things had calmed down and I could stay in my seat longer. I hogged that bathroom so much on that flight that the other business class passengers had to use the bathroom in the back. I think I really “cheesed” them off but such is life!
Finally I wound up grounded for a while at home. My girlfriend Jacquie recommended a Urologist for me to see, Dr. Wonderful. Her friend Anna’s husband was in a car accident, his bladder was crushed and the doctors wanted to remove it. Anna would not allow it. She found Dr. Wonderful and he saved her husbands bladder. Such a doctor sounded worth a visit. Even though he was not on my insurance plan I decided he could be worth the fee. I decided to print all the information off about Dr. Fugazotto’s website and ask Dr. Wonderful to do a broth culture for me. I sent him all of this information prior to my visit as well as my medical file and my diary of symptoms. At that time I also wondered if Candidiasis could be a factor related to my symptoms. Like so many other IC patients I had read “The Yeast Connection, by William G. Crook”. The same day I went to see Dr. Wonderful I went to see my Gynecologist first. I explained my situation to her and she barely paid attention. She just continued to conduct her usual exam. I told her about my concerns with yeast and asked her to do a sample of my urine. She refused and said that I was not sick enough to have Candidiasis. I even took a shot at trying to get her to do a broth culture. Although she was intrigued she said that her lab would not do it. Strike one!
I then went to see Dr. Wonderful. He glanced through the paperwork I sent him while I sat across from him. He said that nothing I sent him told him anything, nothing! Not my medical notes and not the medical documentation I provided him from Dr. S. He said that he could not see anywhere at all where I had IC. Now hold on a minute here. I was the last person who wanted to be told I had IC and maybe I did not. I am no doctor but there was no way that there was not any evidence of IC whatsoever. There was plenty. Even I was smart enough to know that. He began to babble words that I don’t even remember. I asked him about the possibility of Candidiasis. He dismissed that right away. He said that I was not sick enough, that my limbs would be red and swollen if I had that. OK, Dr. Wonderful then what is wrong with me? He told me to get off of my birth control pills for a month. After one month I would feel better. That the birth control pills were causing yeast and that was causing my symptoms. I said let me get this straight “I don’t have Candidiasis?” “No”. “I am not sick enough”. “No”. “But I have yeast and that is making me sick”. “Yes”. Where the heck did this make any sense? That was the stupidest thing I ever heard. He was totally contradicting himself. I had wasted my time and got disappointed yet again. As you can imagine, I left his office pretty pissed off.
It baffled me that so many months had gone by and no one had taken any blood tests. Not Dr. S, not my general practitioner and not Dr. Wonderful. That thought appalled me.
I also began to worry that something more life threatening was wrong. I really started to get scared. Sometimes I used to think that death was the only thing that would bring me peace. That would be the only way I could feel good again. In death I would not have to suffer. Not that I wanted to die or that I would ever physically harm myself, ever. I just figured that we all had to die sometime and for me it would not be so bad because not having to suffer anymore would give me something to look forward to. It was when I got scared that I had a life threatening disease that I realized that death was not something to look forward to and life was worth living. I decided to find a new general practitioner. I had to find someone who would listen. I was at the point where I was afraid to face new doctors because of the fear of being dismissed, not listened to, and let down. I prayed to god that I would find a good doctor. I could not bear another cranberry juice speech. Once again he answered. Dr. D is perhaps one of the nicest people I ever met. She listens to me, understands my concerns, and when I asked to be tested for something she honors my requests. Dr. D understands that a patient deserves piece of mind. That running tests will at the very least put me at ease so I can put that fear to rest and move on. She certainly believed I should have blood tests. Boy did she ever! I stuck my arm out to give blood and I tend to keep my eyes closed when the needle is in. When I looked down on her desk there were four viles of blood. “Boy, I said, you really are gonna give me the works”. She said “yep”. It was clear to me that she was listening. Of course all of those tests came out normal. This felt really good and put me at ease. I am so thankful for her.
I had not given up on the idea of a broth culture. It became clear to me that I had to go to Dr. Fugazotto. At that time I really wanted a doctor that I knew to order the test and not someone who was a stranger to me, but it became clear that this would not happen. So I called Dr. Fugazotto and asked him to send me a test kit. This would take about a week so more time would elapse. More waiting! It sure is hard to have patience when you have IC, and I was getting worse. I was heading into my fourth month and I was more run down than ever. I was having more attacks and I just felt more ill everyday. My immune system was weak. In a course of about five months I caught five colds. Before that I caught about one a year. I was tired all the time and the feeling of flu/virus like symptoms got more intense. If there was one thing I did it was get up and go to work everyday. I did not even look sick. I carried on with my job and most people never knew there was anything wrong with me. Unless I said so no one ever would have known I was sick. It amazed me that I could feel so crappy and look so good healthwise. In my fourth month I started feeling lousy enough to stay home from work on occasion. I never did this before. I found myself content to lie on the couch more and more. Before IC laying on the couch as much as I did would have driven me nuts. Before, even when I had a cold or the flu I would become “antsy” and have trouble staying in bed. Now I was content to just lay there. Finally, my test kit arrived from Dr. F. On the day I took the test through some miracle my bladder was quiet and I was able to hold my urine in for the three hours required (if you can) before voiding. Three hours, that was a miracle! I sent it in and had another 1-2 weeks to wait for the results.
I decided to stop taking my birth control pills for a month to see what would happen. Not because Dr. Wonderful told me to, believe me. I had no respect for the man whatsoever. Yeast I was still suspicious of and I read that birth control pills can cause yeast overgrowth. Previously I had yeast infections and did not even know it. I know that now because I passed them to Michael. Yes ladies, I know what you’re thinking, he did indeed get those infections from me. Michael and I traveled together frequently since we work together. I gave him a yeast infection twice and prior to each infection he was traveling with me for weeks. He had not been out of my site. So please lay those suspicions to rest. Hee hee! Getting off the pill gave me hell on earth. The intensity of my period got me so sick. I was nauseous, had a pounding headache and my bladder was swollen and tender for days. I totally regretted getting off the pill at that time. I figured that by the time I got off the pill it was too late, the yeast and bacterial infections had already set in, and getting off the pill would not make a difference at this time. The following month I got back on the pill. I could not bear another period like that.
One day I finally received Dr. Fugazotto’s test results in the mail. The test results read positive for Enterococcus. The same result as over 90% of the test samples sent in from IC patients, both technically diagnosed and un-technically diagnosed. Believe it or not I was actually in disbelief. Even though all my suspicions leaned towards a positive result I began to become skeptical. The whole thing became nuts. Was I really supposed to believe that I would read some woman’s book, find a miracle cure and get well? Now I began to question the integrity of Dr. Fugazotto. Was he trying to make a profit? It was not long before I dismissed that theory considering that $25 per sample did not exactly rake in the big bucks, and there was a lot of work behind the testing. Especially for the first sample when he does sensitivity tests against several antibiotics. Then I thought that maybe his results were tainted because he was trying to prove something to the medical community through his research. Now I started to doubt Cathy’s book as well. Maybe she was a nut too. I really did not believe that but this is what surfaced in my brain. I know this sounds totally ridiculous but I was desperately searching for an explanation as to why someone would be trying to “pull the wool” over my eyes. I was afraid I had become gullible and was being taken in by a scam. How could I find out if I really had an infection or not? For days I thought long and hard. I felt nervous and unsure. I did a lot of thinking and staring at the walls in my apartment. I always say that I thought so hard I burned holes through the walls with my brain waves. It was really intense and I felt really confused.
I began searching through the internet in hopes to find some more people out there who had tried Dr. Fugazotto’s treatment. I needed to hear about more experiences and at that time I was not familiar with the IC message boards. I found a website called the ICIC. They were supporters of the antibiotic theory. From that site I got the number of a woman named Myra and called. Myra and I spoke for at least an hour. She had found success in the antibiotic therapy, very slow success. She had been on antibiotics for three years. The reason she was on so long was because every time she got off her symptoms would return. She said that the length of time was due to other complications she had. She was also unable to take the strongest antibiotic due to a bad reaction. Three years! I had hoped I would not have to be on antibiotics for three years. At that time all I could see was being on antibiotics for three to six months which was apparently effective for many other patients. Even the thought of a year was too much for me at that time. If there is one thing I need to make clear it is that most of us do not want to go on antibiotics. One of the first things you wonder is “how long will I have to be on these things?” You hope not for long. Also, the thought of an on going yeast infection did not appeal to me. I don’t think it appeals to anyone else for that matter. That was the biggest put off. I explained to Myra my doubts about Dr. Fugazotto. It was clear that she supported the program, and presented that she had been well for three years now, but she stepped back just enough not to try to influence me on what to do. I guess she understood that I had to decide for myself. While I was on the phone with her I found out that there was one lab in the country that did the broth culture and that was United Medical Lab in Virginia. That was perfect. I could now send another lab my sample and compare results. Of course this would require more waiting! When I hung up the phone with Myra she said something I will never forget “You are on your way to being well.” I remember feeling how good it would be if I was actually on my way to being well.
The Myra experience did begin to help my confidence in antibiotic therapy but I was not fully confident yet. I sent my sample into United Medical Lab and waited. In between the time I sent the sample and the time I received the results was when I got that viscous menstrual period that I spoke of earlier, the one that got me so sick. This was enough to upset me into thinking that I just could not continue to live like this. I often got knots in my stomach thinking about whether the antibiotics would actually make me well again. One of the reasons that the battle in my mind was so intense was because I wanted to have hope but I did not want to be let down. Hope is a good thing but it also can be scary. As a human being you begin to fear that your hopes will not become reality, that you are setting yourself up for a fall. You have a fear that the end result is that you crash and burn, left devastated with nowhere else to turn. Hope can be a very frightening thing. I welcomed hope and at the same time I feared it. Even though I was afraid deep down I was glad that there was the possibility that at least I had a chance now. I continued to feel the desire to read more stories about people who had been helped by antibiotic therapy. I was hungry to hear more and there was very little out there on the Internet. The stories that were out there were few. It was not until much later that I began to find more success stories. One night I doggedly searched for three hours in hopes to hear from those who had gotten well or experienced great improvement from antibiotic therapy. I only found one but it would have a great impact on my life, on that night and in my future to be. I came across a site called “Is There a Cure for Interstitial Cystitis.” A girl named Nancy told the story of the successful results she experienced with Dr. Fugazotto and his antibiotic therapy. So here was yet another person reporting success. One of the reasons Nancy’s website was created was so that woman could share their success stories. I eagerly went to read the stories about other women but unfortunately the site was still under construction and Nancy’s great story was the only one. Boy I had wished there were more. That is when I found her on the message board. A woman named Maggie wrote that she was 70% better and was looking forward to sending in her story when she was 100%. I sent her an e-mail with the title “Would love to hear about your 70%”. After hours of surfing the net it was about 11:00 p.m., I shut down my computer and climbed into bed. I was restless with thought. I wanted some kind of sign that I was going to be well again. I wanted to hear more stories about women who got well. I prayed and prayed for a sign. About an hour and a half more had passed and I was so restless that I turned my computer back on again, and there it was! A return message from Maggie. Here it is word for word.
Hi! I'm sure you've heard/read Nancy's success story using Dr. F's antibiotic program. I'm not 100% better yet, but I am about 70% better overall (still having vulva-area burniness likely due to yeast related side effects of the antibiotics, but as I reduce them, that'll eventually lessen and go away). My actual IC-related symptoms (urgency, horrible urethral pain, groin aches) are a fading bad memory! I was never actually given a definitive diagnosis of IC...mine was called "urethral syndrome," which many believe to be a "mild-end" form of IC. It was caught quickly.
My story is long, and I'll be happy to share, but for this initial message, I just want to say that I was feeling hopeless back around Thanksgiving time...in pain, spending most of my time lying on the couch with a hot water bottle, crying and praying. Thinking death would be better than what I was going through. Then, I discovered the CRC and Dr. F on the Internet. I'll always believe my stumbling onto this was a direct answer to prayer and to the anointing healing service my church had for me. It was a week later I sent my urine sample off to Dr. F. I always believed my problems were bacteria-related, and here was proof. I was started on Augmentin 250 mg, 3 times per day. I'd been given other antibiotics (you name it) but none were right for the Enterococcus Faecalis Dr. F found in the broth test.
I noticed an improvement of 30% better in about a week. Progress is VERY slow on this plan, I must tell you. And sometimes it seems you're slipping backwards...but I didn't give up...my dosages decreased and when yeast became a problem I exchanged Augmentin for its non-acidic form, Amoxicillin. I've been on the meds since Dec. 22nd...about 5 1/2 months now. I take Nystatin tablets and occasional Diflucan for yeast. I eat lots of plain yogurt with blueberries. (Are you familiar with the IC diet suggestions restricting acidic foods, etc?)
I finally had intercourse again after 9 months! Didn't hurt...just a brief minor discomfort for a moment. And last week I signed up for a health club membership. I'm doing Nautilus, steppers, recumbent biking, etc., and walking every day. (circulation "downthere" is vital!). Other than the yeasty burns as I call 'em (putting a dab of plain yogurt around the entrance to the vagina helps a lot)...I'm nearly back to REAL LIFE.
If you'd like to call me, let me know and I'll give you my phone number. Where do you live? Age? Married?
I'm 43 (but I think I'm 20!), married, one child (Bill, 16 yrs.). I am a regional magazine editor and a have a degree in secondary education in chemistry. I live in the northeastern section of Pennsylvania, north of Pittsburgh. I'm not working at the moment. The magazine work is seasonal, and I was substitute teaching half days, but school's out now for summer. I'm hoping to feel good enough to look for full-time work soon!
This all sounded way too familiar to me. Thinking death would be better, feeling god had been listening, etc. Even though it was only an e-mail, for some reason I felt a bond with this woman. I could tell by the way she had wrote that we could relate to each other. I could tell that she was not some nut I had found on the Internet. All those Internet horror stories can make you leery of people on the net. You know how sometimes you just click with people? I felt that I could click with Maggie. I prayed hard that very night and god answered my prayer by sending me Maggie. This would be the start of many e-mails and telephone conversations between us. Hearing from Maggie put me at ease enough to finally fall asleep that night. It would be a few days before my United Medical Lab results would return but after hearing from Maggie I was pretty sure I was going to begin antibiotic therapy regardless of United’s results.
Dr. Fugazotto recommended I take Augmentin. It had the best results in my sensitivity tests. I will tell you what antibiotic I took and I will even tell you what dosages I took so that you get my whole story later. However, please, please do not go out and blindly take the same antibiotic I took just because it helped me. You must have your own sensitivity test. An antibiotic can be of no benefit to you if you don’t find out if it will kill the organism that has infected you. For example, Augmentin and Amoxicillan are two of the top drugs Dr. F recommends for his IC patients. However, in my case Amoxicillan scored poorly. He did not recommend it at all. Maggie had good results with both Augmentin and Amoxicillan. She began with Augmentin and later switched to Amoxicillan since it has lower acidity. If it had not been for my test results I may have switched later as well, going from an effective to an ineffective antibiotic.
Now I had to convince a doctor to prescribe me the antibiotics based on a theory he had never heard of in his life. If you can recall I did not have much luck with doctors in regards to this therapy before so I was nervous in presenting this once again. I was afraid I would be regarded as a "gullible loony toon". I had been a little mad at Dr. S for not providing me with any answers but at the same time I knew that IC was frustrating for doctors as well. To date there is no test that will pinpoint exact results for a positive diagnosis for IC. Many patients are still being diagnosed through process of elimination. It is hard for doctors to determine that IC is what you really have for sure. Plus there is no proof as to exactly what this "IC" even is. Unless your case is severe, often doctors will disagree as to whether you have it or not. The one thing I liked about Dr. S was that he was young with a great sense of humor. He made me laugh and it was always a pleasure to chat with him. Besides, I thought it would be nice to have a Urologist monitor my treatment. Mentally it would give me some ease on this lonely road. So off I went to see Dr. S. He asked how I had been and I told him that I was getting worse, which was the truth. I told him about the increase in my virus like symptoms and the fact that I was tired all the time and about my bizarre feet aches. He put his head down in disappointment. He said that he still believed I had IC and stated that he could diagnose me. I agreed with him but told him that I did not want a written diagnosis. I also did not want to focus on running from doctor to doctor for an answer, since I knew they would never agree as to what I had. I felt that even if Dr. S did diagnose me it did not mean that other doctors would take it seriously anyway. Then I would sit around questioning whether my diagnosis was even correct. I read about so many people that banged their heads up against the walls trying to get a technical diagnosis and even when they did sometimes they were not even sure it was correct anyway. I did not want this to become my focus. I wanted to focus on getting better now. Most would not agree with my perspective on it but that is OK because the choices I made were for me and not advice for others. I told him "I think I know what is wrong with me". He looked a bit skeptical but said "OK, let's have it. I am young, I have an open mind." I talked about the philosophies at the Cystitis Research Center (Dr. F's lab) and showed him my test results. I told him that antibiotics improved some people's symptoms and healed others altogether. I said that I was not sure how much better they would make me, 50%, 70%, 100%, but I wanted to try. He was still a bit skeptical, but felt that antibiotics would not hurt me. More importantly, he respected my wishes and my treatment choice. Something that I am very grateful to him for. He did not deny me my chance to get well. He did not dismiss me like I was some fool just because the therapies I spoke about were unfamiliar to him. For this I will always be grateful to him. We also agreed that I would try Elmiron if this did not work. I was not into taking a drug for the rest of my life but knew I would have to do something in the event that antibiotics did not work for me. I hoped it would not come to that but at least I had a backup plan.
I began taking Augmentin on June 16, 1999. After about four days on the antibiotic I had seven good days in a row in regards to my symptoms. This was an accomplishment for me. Before I was lucky if I had two good days a month and I was so sick the month prior to taking antibiotics that I had none. I was lucky to notice that the antibiotics were making a difference in a short period of time. Feeling better several days in a row so quickly gave me inspiration to continue forward. For many participants in the program it is over a month or more before they notice any changes at all. Making it harder to give the therapy a chance to work, constantly wondering if you are doing the right thing or if you are making matters worse.
After four days on the antibiotics Dr. Fugazotto had me send in another sample to determine if the dosage that he recommended was accurate for me. I started on 750mg a day and after the first follow up test I was lowered to 500mg a day because I had too much antibiotic in my system. I am talking to you about the kind of antibiotic and dosages I took so that you have insight to the program, but I do not recommend you follow what I did just because it helped me. I am just telling you these things because getting a better idea about the program was something that I was desperate to learn about before I started. You still need to send in your own sample to be tested. Again, two of the most common antibiotics recommended by Dr. Fugazotto are Augmentin and Amoxicillan. For me Amoxicillan scored very poorly in my sensitivity test. He did not recommend I take it at all. Some patients switch from Augmentin to Amoxicillan because of the difference in acidity. If I had not been tested and just blindly took antibiotics I could have wound up taking something like Amoxicillan for nothing, creating myself problems with yeast for no benefit. So please don’t do that. You need to get your own cultures before beginning this program. Don’t just blindly take antibiotics.
If there was one thing that bothered me it was the thought of the long term yeast infection the antibiotics would cause. I knew that I would have to work very hard to control it. I felt that a yeast infection was inevitable no matter what so I worked to try to ensure that it would not get severe. During antibiotic treatment I worked on yeast CONTROL. Later I would work on killing it all together. I also worked on keeping my immune system boosted so that I could help my body to heal itself and so that my immune system would not crash while on the antibiotics. From what I have read two of the most common reasons antibiotic therapy fails for some people is because their immune system crashes or their Candiasis gets too severe to bear. I knew that treating yeast was a must if I had any chance of succeeding. Many participants in the antibiotic program use an antifungl called Nystatin to control yeast. At first Dr. S was not really in favor of keeping me on Nystatin for several months and I did not want to push my luck since I was grateful the he was open minded enough to give me the antibiotics. So I treated yeast using alternative therapies in the beginning. I added in the Nystatin about four months after I began therapy. By then Dr. S was more confident to prescribe it since reporting my success.
There is a multitude of natural antifungal remedies on the market to choose from. Following are some of the remedies I used to control vaginal and intestinal yeast.
When things really started to bother me in my vagina and I just could not take it I would use Monistat which helped me a great deal. Out of fear of over use I did not do the full treatment. I would buy the 7 day suppository kit and use it for one or two days when it got bad, just to calm things down. There are a lot of natural remedies on the market to treat Candida. I highly recommend buying and keeping a copy of "Prescription for Nutritional Healing", by James and Phyllis Balch. From there you can create your own anti-candida plan which you are comfortable with. The Candida Wellness Center is another good source for choosing an anti-candida plan. One more excellent source for both learning about and controlling candida is "The Yeast Connection Handbook", by William G. Crook. I am pleased to say I did very well with yeast control, especially vaginal yeast. I did have an infection, but it was not too bad and it was really bearable. I did very well in that my vagina did not burn too badly on a regular basis like many other patients. The one thing that I must warn you about yeast is that it can mimic the symptoms of IC. It can cause such symptoms as frequency as well as others. Often when my vaginal yeast infection would act up my frequency would increase.
As I mentioned before, it is important to keep your immune system boosted to aid in healing. For my immune system I took Ester C and Cat’s Claw capsules. As I got better I was able to add in multivitamins. I also took Aloe Vera capsules, Vitamin E and occasionally drank marshmallow root tea to aid in healing my bladder. I was lucky that I was able to tolerate many different kinds of vitamins. Those with low tolerance may have to build up their tolerance levels slowly when taking vitamins by trying different vitamins and herbs in small dosages first. Also keep in mind that your body may not react very well to a vitamin or herb at a certain time in your healing process which means it is the wrong time to try it. Sometimes I was only able to tolerate certain things later on after several months had gone by and I was further along in my process of healing. In other words, what I could not tolerate at one point I could at another.
Since bacteria hate warm temperatures, whenever I had the time I would use the sauna at my local gym to help sweat the bacterial infection and poison out of my body which I felt IC had created. When I had sex I used condoms to ensure that the infection would not be passed back and fourth between my partner and I. I bottle washed after bowel movements and before and after sex to prevent re-infection. Bottle washing is a sanitary practice I use to this day in hopes to prevent infection. I learned about bottle washing from the book "Cystitis", by Angela Kilmartin. One word of warning though with bottle washing. You have to be very gentle when washing the perineum and be careful not to overdo it. You can overwash and rub the skin too hard, leading to itching and irritation in the anal area. That is what happened to me.
On this program it is possible to take two steps forward and one step back while healing. It was a good thing that my friend Maggie warned me that healing was a SLOW process and that I would have both good days and bad days. She warned me that I would go backwards. You can only imagine what it feels like to have improvements and feel great for several days in a row and then go back to feeling sick again. Even though I was warned about this I still worried when it happened. Waxing and waning was tough in the beginning and wondering if the setback was temporary or permanent bothered me a great deal. After a long while I learned that good days would return again soon. You need to have A LOT of patience on this program. Many of my bad days were around the time of my period. My progress would start to drop again about two weeks before my period and as time went by and things got better about one week before, as more time went by a few days before. Sometimes PMS still effects me to this day about a week before my period my bladder gets a bit nervous, however sometimes it does not effect me at all.
I kept a diary of my symptoms. On an Excel spreadsheet I logged in my symptoms that would occur throughout the day, the food I ate, and the supplements I took. I also created a scale so that I could measure improvements. The scale was elementary but quite effective. It consisted of the numbers one through four to measure all the scenarios I would physically experience.
1= feeling great. Close to normal.
2= feel sick but can function.
3= sick and lying in bed.
4= in hell!
This scale helped me a great deal. Like I said when I felt good I was on top of the moon and confident that the program was working. When I started to go downhill I began to question whether the program is working or not. It is natural to feel confusion on this program. The scale helped me to look back and remember that things really were improving as time went by. I recorded the number of days I was good verses bad and calculated an improvement percentage every month.
I will share the results with you later.
I would like to take the time now to stress the importance of following a low to no sugar diet on this program. Bacteria and yeast feed off of sugar and it is counterproductive to inhibit the growth of those organisms when your aim is to kill them. You must also avoid yeast and mold products such as bread and cheese in your treatment of Candida control. It was very difficult for me to stay completely sugar free through the whole program. When I was working on controlling yeast I would allow myself to eat a limited amount of natural sugar in products that are fruit -sweetened such as ketchup and jelly. I also allowed myself some carbohydrates such as white potatoes and brown rice. It was only when I wanted to go really strict that I would cut these out of the program all together, eating mostly vegetables and meats. I practiced both low sugar and no sugar diets and I highly recommend “The Yeast Connection Cookbook”, by William G. Crook & Marjorie Hurt Jones for innovative and tasty recipes. You would be surprised at the variety of sugar free or low sugar foods you can eat when you search for them. Here is a short list of some of my favorite foods. Remember that these are a sample of my favorite foods and what “I” could tolerate.
The best place to hunt for sugar and yeast free foods is your local health food store. Due to my career I was pressed for time and could only spend a limited amount of it cooking so it is possible to find food on this diet that you can prepare relatively quickly. The Atkins diet is also a great source for finding foods that are low in sugar and carbohydrates, however you must stay away from the foods on the Atkins diet that contain yeast or mold. Remember, carbohydrates are also a form of sugar and you must choose how much you wish to allow in your diet if at all. Many of the foods listed above do in fact contain a fair amount of carbohydrates even though they don’t contain refined sugar and the amount eaten should be taken into consideration. Again, the degree of strictness you wish to follow is up to you. At the very least "The Yeast Connection Handbook" is a good start in learning a general rule of thumb. Also, know that my tolerance level was higher than some other IC patients and that you need to tailor a diet that is not only sugar free but a diet that “you” can tolerate.
Foods from the Atkins Center did not bother me, however there are chemicals in these foods that may bother you. If that is the case you can follow the Atkins diet but don’t use their products. I have spoken to a few IC patients that went on the Atkins diet to lose weight and wound up feeling better by accident. If you feel you would like to try Atkins products you can find them on their website at atkinscenter.com.
As time went by things began to get quieter and quieter in my stomach, pelvic and bladder area. The feeling of constant pressure began to subside. I remember being able to put my hands on my lower abdomen again without experiencing discomfort. Before that my underwear would often be too much pressure for me to tolerate. I could feel myself becoming stronger as time went by. I had my very last violent IC flare on July 27th, 1999, about a month and a half after I began the antibiotics. It was not the final disappearance of symptoms but the last really bad attack I ever had. That feeling of being tired and worn out all the time began to disappear as time went by. That general ill feeling (flu/virus symptoms) slowly began to fade away as well. I used to get so worn out from tasks that were as simple as cooking a meal. My body had felt weighed down and tired and now I was beginning to feel my energy return. Before treatment I had become content to lie on the couch all the time in my hours off from work. Before I got sick I could not sit still so I was not the type of person to lie around. I remember one day during the time I was getting better, standing in my kitchen in a great mood thinking about how much better I felt and how much more energy I had. Then it dawned on me. I could not help but wonder how the heck I managed to often be in a good mood. How could I be in high spirits when I was suffering, felt that my body was falling to pieces and felt that my health as I knew it was gone forever? Then I realized that sometimes a smile is all that you have. The human spirit can be a powerful thing. It was my spirit and desire to be happy that helped me through a lot of it. I don’t know what I would have done without it.
By my the third month days of feeling good were starting to outweigh days of feeling sick but I hung in there with the same dosage for about another month. In my fourth month I decided to reduce my dosage from 500mg to 375mg of Augmentin a day. I started feeling a little more symptomatic from the dosage cut and began to panic so I called Dr. Fugazotto. He advised that I juggle with a lower dosage until it felt right. He advised that I alternate days and take 500mg of Augmentin one day and 375mg the next. He advised me that sometimes when you are cutting your dosage you have to experiment a bit to get the dosage right. This should be measured by the way you are feeling and by sending a sample in to Dr. Fuggazotto when you make any changes to check and make sure the organism Enterococcus is not present at the lower dosage. When I tried alternating days I felt better again. I did this for about another month. Then in my fifth month I tried 375mg of Augmentin everyday again and the second time around it worked. Again, I am not giving you a dosage plan to follow. We are all different and what worked for me may not work for you. One of the biggest questions you will face on this program is “When can I lower my dosage and when can I get off antibiotics?” My only answer is that you have to take it as it comes and use the way you feel as a guide for getting off antibiotic treatement. There is no handbook that will tell you exactly what to do and it is very hard to deal with that. I had a plan in my head as to when and what I would lower my dosage by and at first I lowered it by too much. I was really upset that things did not work according to the way I planned. Then I realized that it was OK to go a little slower than planned. I had to use my symptoms as a way of measuring progress. I had to go the lonely journey of finding out what would happen as I went along.
I continued to cut my dosages and as I did my yeast infections started to relent which of course made my overall symptoms even better. It is ironic that taking the antibiotic is what made me feel better but when the time was right slowly getting off them was what I needed to continue to feel better. At some point I needed to get off of them to continue healing. After six and a half months I felt in my gut that it was time to get off of the antibiotics altogether. My instincts told me that was what I needed to do so I did. I told myself that if I were wrong I would go back on again. Of course I prayed that I would not have to. I did not want to be on antibiotics any longer. I think that for most of us, we wonder when we can get off of them from day one. To me being on antibiotics for several months was not appealing. However, it was also still better than being sick all the time. What might cause IC and where you feel yours may have originated is a matter of your own beliefs and opinions. If you do not believe a bacterial infection is a factor in your case I can respect that and believe you should follow your own will. For me, I feel that I had an infection that was deep in my bladder. It was an infection that a short course of antibiotics would not cure. Like I said, as time went by I slowly felt better so I feel that the infection was killed slowly and that antibiotics were needed on a continuous basis to kill it all together. I feel this way because of the things I physically experienced. To this day I don’t know that bacterial infections are the origin of my problems but for me it sure is a very large factor in causing my symptoms. I also believe that not all but A LOT of woman out there are sick and in pain due to a “bacterial connection”, just like me.
After I got off antibiotics I was good for about three weeks and then I started to panic again. It was winter and a very bad year for the flu and I was getting that old familiar general sick kind of feeling again. This scared me because I did not know if I was getting the flu or if my symptoms were returning. I started to worry and cry. I even started to take antibiotics again. I was sure I had to go back on. Then after about two days something inside me said I was doing the wrong thing and I got back off. To top it all off I was using too much tea tree oil to help clear my yeast infection and my vagina dried out. Of course I thought it was a sign of my symptoms returning, but after I stopped the tea tree oil my moisture returned. I also continued to aggressively treat yeast and I even got off birth control pills again, this time with success. There was a real feeling of being vulnerable and unprotected without the antibiotics, a fear that only time could heal. As time went by I continued to feel better on my own. I finally rid myself of that lingering flu so that ill feeling I was having went away and I came to a point where two problems remained. There was tension in my pelvic floor region and my vagina continued to itch and burn.
I had read about BJ Czarapata, a nurse practitioner who practiced a similar method of antibiotic therapy to Dr. Fuggazoto. I was very impressed with BJ’s work and I decided to travel to see her. BJ used a combination of antibiotics, anti-fungal medication, diet and pelvic floor therapy to treat her patients. I had heard from others about how wonderful she was and how much she helped them. If I had known about BJ I would have gone to her from the beginning. Unfortunately I did not learn about her until I was several months into treatment on my own. Although I was already practicing most of BJ’s methods, pelvic floor therapy was something I had not tried and I wanted to learn more about. I traveled to see BJ and had a very pleasurable visit with her. She totally understood the things I had been through and it felt good to spend time with a medical professional that shared my beliefs. She told me that she was so happy for me, that I had come as far as I had and that I was getting better. I never forgot it because I really felt as though she cared. She gave me a pelvic floor analysis, found my trigger points and recommended ice massages and exercises for me to follow. She also recommended that I see a professional physical therapist. She felt that it would be key in helping me to stay well.
It took me weeks to find a physical therapist. Believe it or not, most therapists don’t practice pelvic floor therapy. In the meantime I went to the gynocologist for the itching and burning in my vagina. As it turns out I did not have a yeast infection. I had dermatitis from over-treating the yeast. My gynocologist said I did too good of a job treating yeast and to stop all anti-fungal medication and natural treatments. She also advised that I soak in a sitz bath of warm water. Within days I got better and the itching and burning stopped. The dermatitis felt exactly like yeast so that is what I continued to treat, not realizing that I was making it worse. The doctor told me that this mistake was common with woman. Eventually I found a very nice physical therapist who helped me a great deal and also re-confirmed BJ’s diagnosis. One of my main problems is that I hold a lot of stress in my pelvic floor region. I don’t know why and I don’t even realize that I am doing it. My resting tone was very high so the therapist taught me how to do Kegals to tire as well as strengthen the muscles in my pelvic floor region. She also taught me internal stretching to help me relax. Within a couple of months the stress in my pelvic floor region was reduced drastically. However, now yet another problem had arisen. My anus was itchy and irritated. This lasted for several months and drove me crazy. I went to my general practitioner and she said that she did not see anything wrong and thought it would be wise for me to have a catscan in my lumbosacral spine region. I did and they could not find any abnormalities. I went to a dermatologist and explained to him that I had yeast infections in the past and suspected that I might have a fungal infection. He said he thought he saw candida under the microscope so he did a skin culture. He gave me some cream and told me to return in two weeks. The cream did make me feel better, at the very least it was reducing the friction when I walked but the itching and irritation did not stop altogether. I went back to the dermatologist and he said the lab reports showed candida. He prescribed me some oral medication and told me to keep using the cream. I asked him for a copy of the lab report and he said that he called on the phone for the results. I asked if I could get a copy for my records when it came in and he said yes. I called several times for that report and never got anything. Of course the itching and irritation did not stop so eventually I went to another dermatologist. This doctor said she did not see an irritation visible so there was no point in doing a culture. She gave me another anti-fungal cream and recommended Zeasorb anti-fungal powder to keep the area dry. The powder was a great idea for keeping dry and reducing friction further. However, once again this helped but did not rid me of my symptoms fully. I was beginning to think this would never go away. I was really frustrated so one day I started searching on the Internet for my own answers. I came across some information about Pruritis Ani, which is intense chronic itching of the anus and skin around the anus. One of the many causes is excessive cleansing of the area. I was a likely candidate since I washed the area frequently to avoid getting another UTI. I stopped the anti-fungal cream but continued to use the powder, and I discontinued washing the area abruptly with regular soap. I cut down washes, was careful not to cause too much friction in the area and I used a gentle soap. I must tell you that cutting down on cleansing does not include skipping washes before and after sex. Eventually it worked and the itching and irritation stopped. I still practice keeping the area clean today, usually about twice a day (more if I have sex) and I am careful and gentle on the area. Perhaps I did have a fungal infection at one time and my symptoms were a combination of both irritation due to excessive cleansing and candida. Since I never saw any test results from the dermatologist I will never really know.
Following are the monthly results, which are calculated in percentages, from the scale I used to measure my progress while on antibiotics. As I stated earlier, each day gets a rating from 1-4 for the way I am feeling. The method is quite elementary but very effective. It really helps if you wax and wane like I did. I calculate percentages by taking the number of one’s on my scale and dividing the total number of days into that number. The ratings are 1- best I can feel, close to normal, 2-sick but can function, 3- sick & lying in bed, 4- in hell! Remember, that before I began I hardly had any days where I felt close to normal.
At the time I am writing this story I have been off antibiotics for 1 year and continue to do well. I do not claim to be cured but 99% better and my IC is under control. I live a normal life and eat whatever foods I wish. I still drink water most of the time because I know that it is better for me, but I also drink a cup of tea everyday and sometimes juice. I can go out to a bar and drink alcohol, however I chose to do that in moderation which is not a problem for me since I was never a big drinker anyway. Most of the time I go to the bathroom an average of 8 times a day, which is considered to be normal. Sometimes I still do go a little bit more but at least when that happens I void a good amount of urine and the urge to go does not remain after. If I have to urinate I can hold it for a while until I make it to the bathroom without pain. Most of the time my bladder remains calm but I do get some irritation and stress right before my period, which passes once I menstruate. I get this sometimes but not always. For a while the outer tissues of my vagina were burning a bit but that has stopped again. I am rid of all the non-bladder related symptoms I mentioned earlier and overall I feel strong and healthy. I try to take care of myself and I take vitamins, acidophilus and cranberry juice on a regular basis. I feel that taking care of myself is a key factor in staying well. Again, I do not claim to be cured but healed of the majority of symptoms that once existed. To put it in short I would be content to live with the way I feel today for the rest of my life.
Not long ago I took antibiotics for a root canal and got bacterial vaginosis. This started some bladder irritation and frequency, but shortly after I cleared the problem the irritation stopped. This convinced me more than ever that overgrowth of yeast and bacteria does indeed irritate the bladder.
IC has effected me mentally forever. Sometimes I do fear that I will catch another UTI that will start the whole viscous cycle all over again. Or that it might even start again for some unknown reason. I wish there were a pill I could take that would guarantee this would go away forever, but that is not a reality so I live with the hand that I have been dealt day by day. If it does ever happen to me again I am determined to fight once more. This is my life, a life which I cherish and a life that is worth fighting for.
I only hope that you also know how beautiful you are inside and that your life is worth fighting for. Have strength and courage on your long and sometimes lonely journey to regaining your life back. Remember that you ARE worth it. Never give up hope and never stop fighting. Most important of all, never stop loving yourself. Remember you are still the same beautiful person you always were. Have strength my friends, have courage.
Update- February 2004
It has been three years since I have updated my story and reported on my progress. I am pleased to say that not only have I remained well, with much work I have gotten even better.
Around the time I first launched IC Success I found a practitioner of Chinese medicine and Acupuncture named Matia Brizman. I found her through one of her patients online. I was told such wonderful things about how she had helped many to get well from IC, that I decided to conduct a telephone interview with her for this site. The positive energy that this woman exuded was like a magnet. We immediately hit it off and I was impressed with her intelligence, her view on the causes of IC, the methods in which she used to attack the illness and most of all her kind and caring heart.
At the time I had healed from IC a great deal but felt in my heart that I could do more. Sometimes my bladder would still get irritated, especially before my period, and sometimes I still had some minor vaginal irritations. One new thing did develop and that was allergies. I had minor skin eruptions on my arms and once in a while a nasty flaming red rash between my legs near the vaginal area (I would later find out that the rashes were yeast related). Now these were not things that plagued me everyday and the majority of the time I felt fine but I thought that it would be better to address these issues now rather than risk them spiraling out of control and getting me sick again. The trouble was that the less that was wrong with me, the harder it was to figure out what to do to get to the next level of wellness. I pondered on what could be left and what I could do to fix it. Clearly the infection was gone. I felt that in my heart, mind and body. Could it be yeast, I thought? My inner voices whispered candida to me.
I went back on the yeast free diet and started to take anti-fungals again. The diet made me feel good, however the anti-fungals usually gave me vaginal burning within a matter of days. So I fell into a state of confusion. I would question if it were really yeast or something else? I would go on treatment, feel confused and then go off treatment. I repeated this cycle a few times over the course of a few months. Finally I got sick and tired of doing it alone. I had become so accustomed to helping myself that believe it or not it took me about 4 months after meeting this woman that I was so impressed with, Matia Brizman, before turning to her for help.
I began treating with Matia. She would talk about my history and my current symptoms and from there she would make a special mixture of herbs for me. In addition she also put me on a very strict low-carb, sugar free diet. Needless to say, being a practitioner of natural medicine, she was completely against antibiotics. She believed that bacterial infections played a role in many IC patients cases but used herbs to combat those infections instead. In my case she believed my current problems were mostly, if not all, yeast related due to my history with birth control pills and the long-term antibiotics that I used. Often when we discussed my problems, time and time again she would refer back to "those antibiotics that I took". In one breath she was glad that I had gotten well and in another she did not believe antibiotics were the right way to seek recovery. However she is wise enough to accept and respect other people's choices, including mine.
Early on when we discussed my treatment we thought there was a strong probability that I would be done in only a few months since I was so close to complete recovery. Wrong!!! As it turned out I had many layers of candida and toxins in my tissues. One way in which to confirm this is to treat it. When you experience die off you know that there is poison coming out of your system. Especially when you feel better afterwards. Matia would use herbs to slowly drain the evils from my body at a steady pace so that I would not have to suffer too much discomfort all at once. Then every so often WHAM, she would hit it hard. During these times I would experience many uncomfortable die off symptoms. Including increased bladder irritation and frequency from the all the cooties passing through my bladder. Sometimes it felt like I had IC all over again and that was a little hard to deal with. Much time had passed by since feeling these symptoms and I had lost much of my threshold to tolerate them. During these times I would use my mind to control my discomfort. I would tell myself that this time these symptoms were a good thing because it was the result of poison leaving my body. In addition my vaginal irritations increased with treatment from all of the evils coming out through that region as well. It was the vaginal irritations that I to deal with the longest and most consistently during my treatment with Matia. They were annoying but bearable. In addition, other die off symptoms for me included (get ready for this people):
Sore throats, profuse night sweats, itchiness, burning scalp, dandruff, dry skin, acne, thirst, fatigue, sour stomach, snotties in the back of my throat and congestion in my chest, chills, coughing, anxiety, foggy brain, tiny little stomach cramps, depression and last but not least my favorite…mad dog doo doo breath. Although hard to deal with at times, these die off symptoms were bearable and if a particular die off symptom became too intense Matia would pull back on treatment and slow it down.
I treated with Matia for just over two years (so much for me getting away with a few months). Now please don't be concerned about the length of time it takes to get well. There were times that I was not feeling well for days or even a couple of weeks during periods of intense die off, but for the majority of the time I still felt really good and I lived my life completely.
I had days and even weeks during treatment where I did not feel a single solid symptom. Nothing!!! So I did not sit around waiting for it all to go away. I did not allow waiting for complete recovery to consume my life in between. I did not tell myself that I would only be allowed to do things once I got completely better. That would have driven me mad. I lived a happy and healthy life in between. I did all the normal things, and for me that included taking 10 mile hikes and going to the gym 3-4 days a week. Plus I can tell you, out of sight out of mind. The better you feel and the more consistently you feel completely normal, the less you even think about the existence of IC. Your life goes back to normal and if you allow yourself to do so you do move on. IT'S SO WONDERFUL!!!
One thing that was true for me (and you may want to note this for yourself in case it is the same for you) is this. The better I got the harder it was to get even better. At times I stayed at the same level of wellness for months until I finally made more progress. Recovery felt so close yet so far away. It still amazes me to this day, how long it took to continue to get better than I already was. So if you have healed and are still in the process of working towards a complete recovery do not be discouraged with the time it can take. Learn to have patience and understand that you cannot force your body to heal. You can help it to heal but understand it will do so in it's own time.
Today I have no symptoms but still work with Matia to increase the strength of my bladder. In addition I continue to exercise and eat right. I believe that every one of us has areas of weakness in our bodies. Unless we have a family history of certain illnesses, most of us don't know where those weaknesses lie until something goes wrong. For me I now know that my bladder is an organ in my body that will always need attention and care to keep illness from striking it again.
Except in terms of continuing to help others, I do not think about IC. I do not fear a relapse of IC because that is no way to live. I did not do all this work to conquer this illness only to live in fear. If it ever does happen again I will deal with it then. I take comfort that my friend Matia is out there to help me should I need her, and I know in my heart that I would fight like hell should I have to face it again. I am not afraid of it anymore and my mind is free.
If you are wondering if I regret taking long-term antibiotics I don't. They healed my infection and did A LOT to get me better. It was what I knew at the time and I perceived it as the best option for fighting IC related infections. I am grateful that they worked for me as well as they did. They did however contribute to a lot of yeast in my system and it took me a long time to get rid of the problem. I felt so bad before antibiotics that even with the yeast problem I still felt A LOT better once they healed that infection. For that I have no regrets. However, since I have experienced Matia Brizman's treatment program I feel that if I had it to do all over again I would have her treat me for the infection (and everything else) from the start instead. I know how powerful her herbs are and I believe that one could treat IC related infections under her care successfully without incurring the massive yeast problem that can come with antibiotics. In addition working with her will take all the "guess work" out of your hands that exists when treating yourself.
I cannot stress enough how important it is to believe that you will get better. If you tell yourself that come hell or high water you are going to get well than you will. Anyone that I ever spoke to who got better was hell bent on getting there. Be relentless!!! It is very normal to have your moments where you feel discouraged, negative and sorry for yourself. You are only human and that is a normal part of the process. I believe that relentlessness and a positive belief system is part of the reason Matia is so good at what she does. She does not give up on her patients and if a certain treatment is not working she will try over and over until she finds what will.
We all have tragedy and pain to face in our lives, and no one is exempt from that. Though I feel very strongly that we can either allow our pain to grow our souls and make us better human beings or we can allow it to destroy our lives completely. That choice is before each and every one of us in every painful experience we face in our lives. IC is a horrible disease that causes many so much pain and heartbreak, so I will not try to say that it is a good thing. Though I will say that my painful experience with IC did result in some good in my life. I grew as a person and recognized just how short and how precious life really is. There were many things that I did not appreciate before I got sick, and now that I am better I know not to ever take them for granted again. Sometimes in life a taste of the sour will give us a greater appreciation for the sweet.
Often it is fear, whether conscious or unconscious, that prevents us from trying to obtain the things we really want in life. IC has allowed me to conquer many fears. Things that used to seem scary now seem simple. I recently invented a humorous board game for the adult sense of humor. Thus far the sales from my little venture have been very successful. What's the point? It's that my experience from IC made me realize that life is too short to be afraid of taking chances. I no longer liked my job and I wanted to do something in business for myself so I did. I took my love of board games and coupled it with my dirty little childish sense of humor and created something that people have a good laugh and a great time with.
Before IC I would have worried about the doom of failure in taking on this little venture. I would have "feared" losing my investment and regretting my decision. I now realize that it is worse to allow fear to prevent you from making your dreams a reality. Are you afraid to believe that you can get better from IC because if you don't you'll feel disappointed and let down? Do you envision the words of the skeptics ringing in your ear "see I told you" upon your notional failure? Well you're not alone. I too had the same fears and overcame them, and my reward for that is a beautiful and healthy life. Fear is no more than a frame of mind and it can be conquered. Work to defeat your fears and take back what is rightfully yours. Your life!!!!
Update- December 2006
It has been three years since my last update, and six years all together since I healed. I am very happy to tell you that I am still healthy and IC free. In October of 2006 I gave birth to a beautiful baby boy. The pregnancy was one of the best times of my life and I never felt better. I went to the bathroom more since there was pressure on my bladder from the baby, and since I drank 8-10 glasses of water a day, but I was no more symptomatic than any other pregnant woman. As a matter of fact when comparing with some other pregnant woman I spoke to I was less! There was a time when I thought I would always be sick and never able to tolerate carrying and caring for a child. Now I am blessed with a healthy body and a beautiful little baby. I am still thankful to Matia Brizman and Dr. Fugazotto for helping me get well. I no longer forget to feel grateful for all of the good things in my life. A blessing that was given to me through the experience of IC.
God bless and be well.